fecal transplantation in Europe

Discussion started by noga 5 years ago

I have multiple relapses of c diff,  and I  want to do fecal transplantation.
I live in israel, and it is hard for me to travel to USA.
It will be much easier for me to travel to Europe.

Do anyone knows about doctors who does fecal transplantation in Europe?

Thanks

 

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idkwia
idkwia
Hi All

You can now get the contact details from a thread I started as I have now asked the owner of the place where they do FMT if I can give out his details.

The discussion thread is called "Clinic In UK Now Doing Faecal Microbiota Transplantation (FMT)" you should be able to get to it from this link:-
www.ei-resource.org/community/groups/viewdiscussion/… luck and let me know how you get on.

Steve
5 years ago
idkwia
idkwia
Hi Guys

I have found a clinic in the UK that are now doing Faecal Microbiota Transplants. If you send me a private message I will arrange for contact to be made.
5 years ago
Maff
Maff
Hi guys,

Right, I have created a new discussion where those interested in approaching GI docs as a group can register their interest. Discussion title: 'Join us to Approach European Doctors for HPI as a Group: List of Interested Members' - should be currently top of the list.
5 years ago
yellow11
yellow11
Hey Alfred,
It's great to have you on board. That report you linked to is fantastic, it's interesting that Scandanavia seems to have a good few doctors (relatively speaking) doing it, if only for c. difficle patients at the moment. Maybe as well as Brisitsh doctors we could enquire there as well. Thanks a million for the link.
5 years ago
Alfredson
Alfredson
Hey guys!
Thanks yellow to referring me here!
Great idea this, it be lovely to get a real FT done.
Heres a great link i found recently about FT
bacteriotherapy.org/docs/… lot of info good information on there ( also a list of people, clinics doing it for the thread starter).

Anyways I'm definitely down for the FT group approach !
5 years ago
yellow11
yellow11
Oops, I hit on the create a new discussion link but I got an error message. Me and technology don't go so well together. Maybe I need some clearance or something? Thanks again for all your help Maff, I know you must be very busy so I hope I'm not taking up too much of your time.
5 years ago
yellow11
yellow11
Hi there,
It's great to hear you'd like to get involved Bushi. I took a shorter course of metrozonodle as well as a few other antibiotics but they really didn't seem to have any effect on me unfortunately. In one way it's a pity if Dr Borody has made it a slightly more complicated procedure, a guess the simpler it is the more chance we would have of finding a doctor whose willing to do this. I think I'm right in saying that Dr Borody has successfully treated some ibs patients but then again ibs covers such a wide spectrum of things that it might be very hot and miss if it works for us. If you'd any ideas of how to get this thing going I'd love to hear it Bushi.
And thanks a million Maff for providing the opportunity to get a group of us together to try and organize something. I'll set up that discussion now, hopefully a few others from other forums might come along as well.
5 years ago
Maff
Maff
Hi guys,

Sorry to hear things haven't woprked out with this round of treatment Bushi, you must be pretty frustrated right now!

yellow11 - If you could create a new discussion within this group to coordinate the gathering of those who want to join us in getting FT done by a gastroenterologist that would be great. Put my name down please
5 years ago
Bushi
Bushi
Hey Yellow11/Maff,

I'd be up for getting involved too. I'm just about to finish a 3 month course of cipro and metrozonodole for SIBO with no real relief in my symptoms. It may have slowed the diahrrea a little but not much. Most of my other symptoms still exist. I still feel like crap every day of my life.

From what I've read though, the jury still appears to be out on whether FT can help with IBS/SIBO type symptoms. But I feel i have nothing to lose!

Just for your info, i read on another forum that supposedly, Dr Borody is now using a different technique where he recommends that people with tough cases of C-Diff for example should use a course of antibiotics then do a total bowel wash out then proceed with a 10 day course of FT transfers. he says that you can also use frozen samples for a week or so until the new flora really settles and lays its roots in the bowel. Perhaps even for several months. It appears he does this for some patients with Colitis for un to 6 months of the year until they are in remission.

Sorry, I haven't got more info on this, it was just something someone mentioned in a forum.

Cheers!

5 years ago
yellow11
yellow11
Hey Maff,
It's really great that you would like to get involved with this. I'm seriously grateful. Have to be honest and say there's not that many other people so far that would like to sign up for this but there is around four or five others who have so that would be a start.
It would be a honour to use your forum to try as you said to coordinate things, thanks so much. If you lie to start a new discussion for this or perhaps you'd prefer if I'd do it, whichever suits you.
Thanks again.
5 years ago
Maff
Maff
Thanks yellow11, the site is not quite as well laid out as I would like but I am glad to read you find it so. I will hopefully be making some changes for the better within the next 6 months to make the community more easy to navigate.

If you know people on another forum who may be interested in FT then it sounds like we have a good start on getting a meaningful group together. If you want to start a new discussion here (or I can) we could coordinate things there and get a good idea of numbers interested. I only suggest using my own site as I know it ranks highly for this subject in Google search so is easy to find. I'm happy to sign up on another group and put my name down if you think that would be better. Let me know!
5 years ago
yellow11
yellow11
Hi Maff,
Thanks a million for your reply. When you mention the work that goes into this website I can well believe it. There is such a huge amount of really useful information on here over so many conditions it must be a colossal undertaking to get it all together and present it in such a well laid out manner.
Genuinely you really are fantastic to do all this.
That's interesting what you say about home fts, I don't think it would suit me. I know of a few other people on a different forum say they were kind of interested in doing a ft should it become available so I was thinking of maybe contacting them and seeing exactly how many people out there would be up for this.
I'm really glad if you think going down this road might be worthwhile. To be honest the chances of finding a gi willing to do this are pretty slim but hopefully they'll be improved a little bit if there's a few of us asking at the same time.
5 years ago
Maff
Maff
Hi yellow11,

Welcome to the discussion, glad you decided to come out of the shadows! Many thanks for your kind comments about the site. I really can't tell you how much it means to me when I get feedback like yours. It makes the work and stress that come from maintaining the site feel a great deal more worth it!

I think most of us who have been diagnosed with IBS by conventional doctors have later found some degree of SIBO or other form of gut dysbiosis is present when the correct testing has been performed. Whether you feel comfortable discussing your most unpleasant symptoms is entirely up to you...but the very nature of this group means most of us here have shared information about our toilet habits!

If you are squeamish then having done home faecal transplants myself I would have to say even if you could find a donor it may be a bit of a challenge for you. I think I have become desensitised to any kind of medical procedure over the years (no matter how disgusting/gory) but I did used to be very squeamish myself and human probiotic infusions (HPI) is certainly not the most pleasant experience...particularly if you have not even done regular enemas in the past and are comfortable with performing them daily.

I would say your idea that a group of patients such as ourselves with gut dysbiosis would indeed carry a lot more weight with gastroenterologists than if we presented requests for HPI individually. It seems your communication with the doctor at the IBS Network backs this up.

I would certainly be very happy to put my name to this idea but unfortunately do not currently have the time or energy to be actively involved in coordinating things.

I had no success with doing things DIY but like you say the faecal matter most likely needs to be implanted further up the colon than an enema will ever reach.

Hopefully others will get on board with your idea and we can start taking this to some GI docs. Best of luck!
5 years ago
yellow11
yellow11
Hello all,
Long time lurker first time poster here. Ok firstly this is a wicked site so much repsect and thanks to Maff. It's a very unusual site in that it covers a whole range of issues but thats a good thing as I've discovered from my own experience and what I've read is that when person has a health problem it usually manifests itself in a lot of different ways. Also it's great to have someone with genuine scientific training behind this, a lot of forums I'm on generate more heat than light if you know what I mean.
Secondly I'm sorry to Noga for jumping in on your thread but my query is the same as yours so I thought I'd post it here. Bascially my gut flora is totally screwed up, I've been diagnosed by different doctors as having ibs, sibo and dysbiosis. My symptoms are pretty disgusting so I won't go into that for the moment if that's ok but basically I don't have much of life as a result of them. Having read up on fecal transplants they really do sound as if they could be the solution. I've tried the diet/probiotics/antibacterials route and while no doubt it's made a difference I'm still not cured.
I would try out the diy method for fts only that 1. I might have difficulty getting a donor 2. I'm very squeamish and 3. I think I read for them to be truly effective it has to be inserted a long way up your colon?
I live in Ireland but would travel to Britain or Scandanavia ( or anywhere really that does not involve the use of a plane). The problem it seems though is that there just isn't any gastroenterologist out there willing to do this procedure except for c.difficle.
So this is what I'm wondering. If a group of us could get together each pledging to give a certain amount of money and simply get in contact with as many gis or research clinics as p0ossible surely there might be one doctor willing to take us on. I've written something similar to this on another forum and around two or three people have shown an interest. If maybe a few more would be so like mined then maybe we could form some sort of group that could push for this. Actually I was in contact with a doctor before who is associated with an ibs chaity (IBS Network) who said while he couldn't do such a thing he would have contacts he could ask around if there was a group of patients behind the effort.
Sorry for going on for so long, maybe this is all pie in the sky but I do think while random people searching for a gi to have a ft done mightn't get very far as a grouping maybe we could effect some change.
I'd love to hear if anyone has any thoughts on this and my gratitude again for this great forum.
5 years ago
noga
noga
Thanks so much Bushi
5 years ago
Bushi
Bushi
Here's a video from the TV Series 'Embarrassing Bodies' describing FTT and mentioning Alisdair McConnachie. Interestingly, he mentions that it is also being used for IBS.

www.livefromtheclinic.channel4.com/case-videos/…
5 years ago
Tracy Mac
Tracy Mac
Most people use the tests listed in the CDD Home Infusion protocol which you will find on my blog, together with 'commn sense' guidance in choice of donor.

The bottom line is that you cannot eradicate all risk with a fecal transplant any more than you can eradicate all risk with any medical procedure. You could do hundreds of tests and still not be certain of a risk-free or successful outcome. Tests will only take you so far and yes, may include false negatives. Only you know if you are sick enough to embrace these risks.

I suggest you ask yourself 'what is the worse that could happen with FMT?' and 'what will happen if I don't do FMT?'

5 years ago
noga
noga
What will be the ideal (not the regular) panel of tests for the donors?
I'm willing to invest lots of money in it, so what is the full ideal list?

Also one have to take into account that serology tests can be negative, only because the person's immune system doesn't produce enough antibodies against the pathogen being tested, and not because the pathogen doesn't exist.. So PCR and other sequencing analysis of blood and feces are needed.

I have partial list, but I would like to add more tests to it :

* viruses (all this are virsues that can pass in stool)
hepatitis A, B , C
CMV
EBV
HIV 1+2
HBV
retro virus- HTLV I+II
norovirus
HAV
XMRV
rotavirus
calicivirus

* bacteria:
Tuberculosis
Yersinia
Methicillin resistant staphylococcus aureus (MRSA)

* parasite:
Treponema pallidum ( syphilis)
giardia
cryptosporidium
blastocystis

* fungi (yeasts and molds): which one?

Also, how to give answer to the problem that there are many false negatives in tests?
So a person can have negative and still carry this.

And how to check for prions ?
5 years ago
Tracy Mac
Tracy Mac
Honest answer? Save yourself a lot of money and find a donor. If you are resourceful and determined enough to find this website and ask these questions then you are resourceful enough to organise a properly screened FMT. Once you get over the 'yuk' factor it is not that hard. Check out my blog for FAQs and Is FMT for You?

thepowerofpoo.blogspot.com.au/… took me two trips to a clinic in Australian and 3 months of FMT from a donor, but eventually I got rid of the strep in my gut. But I was a difficult case as I have other perpetuating factors. C Diff is apparently the easiest to treat.

Good luck!
5 years ago
noga
noga
many thanks to both of you.
I wrote Dr. Alisdair McConnachie 3 (!) mails, but he didn't answer them at all.

I also heard of Dr. Max Nieuwdorp, endocrinologist who does fecal transplantation for obese people, to help them lose weight.
[Academic Medical Center, Department of Internal Medicine, Meibergdreef 9, room F4-159.2, 1105 AZ Amsterdam, The Netherlands + University of Amsterdam ]

I also wrote him 2 mails, and he didn't answer.

Do you have more ideas, or more options and info?

thanks again
5 years ago
Maff
Maff
Thanks Tracy, I was just coming over here to say the same thing

Noga - Here is an about Dr. McConnachie using faecal transplants for C. diff - www.elements-science.co.uk/2010/12/faecal-transplants-the-future-therapy-for-clostridium-difficile/
5 years ago
Tracy Mac
Tracy Mac
Alisdair McConnachie of Gartnavel General Hospital in Glasgow
5 years ago

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